Update!

Wow. What have a learned from the last 3 weeks? You need to go with the flow. As a super type A person, this has been incredibly difficult for me, but I’m getting better at it.

Losing my beautiful natural birth, missing out on the golden hour, having a baby in the NICU, having a baby undergo surgery on his 3rd day of life, having a baby face and overcome several bumps in the road to recovery, accepting I am part of the 3-5% of women who physically can not breastfeed, and many other things I’m sure I am forgetting to mention– they have helped me overcome my inability to ‘go with the flow’.

Baby C had surgery on the 28th of October. That morning C and I went back to see our baby boy, and meet with the anesthesiologist, surgeons, and neonatologists assigned to his case. They went over some aspects of his surgery, and we passed our cell phone numbers off the nurse who would be updating us throughout his surgery. Eventually they had to take him back, so we gave him kisses, and left teary eyed to wait. We were so excited, and terrified.

Finally the wait was up and we learned that the surgery went very smoothly. Our son tolerated it very well, and they were able to repair his fistula with one surgery. He had been impressing everyone since he was born, so we were not surprised that he did so well. We were overwhelmed with joy, and so thankful that he was on the road to recovery.

The next few days we faced several bumps in the road. They were worried about his blood pressure being too low, his lack of urine output, and he developed a pneumothorax on his left side. They had to start him on a drug to help his BP, and put in a chest tube to relieve the pneumothorax. Then they had to consult with nephrology because his kidney function tests were showing our boy was suffering from acute kidney injury. He also wasn’t able to be weaned off of the ventilator because he wasn’t fully awake yet, and they blamed that on his kidneys not filtering everything out.

It was several days of constant stress. It seemed like every time we took one step forward, we then took two steps back. Finally on November 1st they were able to remove the chest tube on his right side. Then on the 2nd he started really waking up! When we did his evening care on the 2nd we saw him fully opened his eyes of the first time since before surgery. Then on the 3rd they were doing a test to see how he would handle being off the ventilator, and he did so well that they went ahead and extubated him!

Finally opening his eyes!

Finally opening his eyes!

On the 4th they did a swallow study to see how his repair was holding up. At first they thought he ‘passed’ but upon closer evaluation the radiologist told us he saw a small leak at the repair. We were so sad to hear that because they didn’t plan on retesting him until the 11th. The only reason we really cared about the extra time is because our son can not have anything to eat orally. He’s getting all of his nutrition IV, but his stomach is still empty and he feels ‘hungry’. He was so upset that night, and we can’t hold him because he still has a chest tube on his left side, and we couldn’t feed him. It took over an hour to calm him down. We felt so depressed and helpless and our hearts were heavy knowing we had another week before he might be able to eat.

Extuabted and awake. <3

Extuabted and awake. ❤

Today (5th) we took another step forward! His kidney function tests are finally starting to improve. They had kind of stalled out (still high, but were not inclining like they had been) over the last two days, but today was the first day those numbers finally started to come down! Nephrology told us that they were optimistic that this would eventually happen, but until I heard that the numbers were coming down I didn’t believe them. We also learned that surgery reviewed his swallow study results and decided that the ‘leak’ the radiologist saw was so tiny that they felt comfortable retesting on Friday the 7th, instead of waiting a full week.

We were elated to hear this. The sooner he ‘passes’ his test, the sooner he can begin oral feedings. Once he has oral feedings, if nothing is coming out of the chest tube then they can take it out and we can hold him! From there it’ll just be getting him to take a bottle and nurse well before we go home.

So our fingers are crossed for Friday.

Baby burrito with the pacifier is about the only way to soothe a 'hungry' baby.

Baby burrito with the pacifier is about the only way to soothe a ‘hungry’ baby.

It took several days for us to get a routine down. Running between the hospital and the hotel, trying to find time to sleep and eat, and me pumping every 2-3 hours around the clock– we were exhausted. More than exhausted, we were dead on our feet. I was getting the postpartum blues, and my husband was concerned not only for our son, but feared for my mental and physical health. Being discharged from the hospital 18hours after delivery, and running around as much as we were was hard on my body. I am happy to report now that we are doing a lot better.

Not only do we finally have a routine, but I’m doing better emotionally. My husband confessed to me that he was sick with worry for my mental health. For days after being discharged the stress of what was going on with our son, and learning I couldn’t breastfeed had me so depressed I couldn’t muster a smile if you offered cash endorsement. Finally we started getting ‘good’ news, I started to learn how to just take things as they come, and having our routine down– we are in a much better place than we were a week ago. I also came to accept that I can not produce breastmilk* and making peace with that brought me more peace than I can describe.

*While my son is in the NICU I’m going to continue to pump (on a less frequent basis than I have been) so that when we do his care I can give him ‘oral care’ with the few drops I am producing. It’s not much, but it is something I can give. Once we go home I am not going to pump anymore, and we will be using formula. Coming to this decision was very difficult for me, but I have the support of my husband and the lactation consultant.

 

 

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